Abstract [en]

Background: Dementia not only affects the individual patient, but also healthcare professionals and the relatives. It is an increasing incurable disease that affects the mind of the afflicted person. He or she will experience difficulties with either expressing oneself, recognizing daily things, performing tasks that he or she previously were able to managed or the ability to plan, initiate or complete various tasks.

Aim: The aim of this study was to illuminate experiences of being a relative of an older person afflicted of dementia.

Results: The results consist of two main themes, relatives experiences of support, with two subthemes, support in the care relationship and support from others in the same situation. The second theme progression of the disease and its affects on relations and feelings, with three subthemes, the partners behavioral change, a new kind of relationship and impact of the disease on feelings. These highlight significant experiences the relatives go through in relation to the disease. Support was something that may be given in different ways and the need for support was necessary. The behavioral change that comes with the disease, results in a new form of relationship with the affected. Feelings of sadness, guilt and shame were constantly present.

Conclusion: The results shows that the relatives need support through the entire disease progression when the behavior of the affected changes and a new relationship is formed. When accepting the disease, the relatives found it easier to deal with life in general. Nurses need to have the means to respond to these relatives and to know how they experience their situation, to be able to support them in the best possible way.